Be Prepared

Source: ADSHG patient booklet (June 2025) — see The Condition for details. Agree your own treatment plan with your endocrinologist.

Essentials of managing your condition

1. Medication timing: it is important to take your tablets every day at the times agreed with your endocrinologist. You may be advised to take them two, three or four times a day; three times a day is most common. The tablets replace the hormone your body would naturally make and are essential for life. Medication is usually taken with water.
2. Be patient: after diagnosis it can take a few months to get the right balance of dose and timing. You will need to watch, together with your doctors, for new symptoms suggesting your medication needs adjusting.
3. Have enough medication: always carry spare medication, as you may need it for stress dosing. Renew your prescription in good time; ideally keep a 3–6 month supply so you do not run out and can increase your dose when needed. A 3-month prescription interval is recommended to guard against unexpected supply problems. On holiday, take twice the medication you need plus your injection kit(s).
4. Medical alert jewellery: wear a bracelet or necklace with phrases such as “Steroid dependent” and “Adrenal insufficiency”; keep a sticker/image on your phone, key ring or fridge.
5. Training: make sure you and your closest family/friends/colleagues know how to give the emergency injection.
6. Steroid emergency card: always carry a steroid emergency card. Download our card (PDF + phone lock screen) →
7. Kit check: check your emergency injection kits regularly and make sure the medication and needles are in date.
8. Share your kit: tell close colleagues, family and friends about your diagnosis and where your emergency injection kit is kept.
9. Medical records: ask your family doctor to clearly record “steroid dependent” and “at risk of adrenal crisis” in your records.
10. Vaccinations: flu-like infections are a known cause of adrenal crisis in steroid-dependent people, so an annual flu vaccination before winter is strongly recommended.
11. Travel: when flying, carry your medication and injection kit in hand luggage with a doctor’s letter explaining why you carry needles and syringes. Take extra medication and an additional emergency kit.

Sick day rules (stress dosing)

When the body experiences physical or severe emotional stress — such as illness, injury, or physical or psychological trauma — it needs more cortisol than usual. Extra medication on top of your usual daily dose may therefore be needed, following the sick-day plan agreed with your endocrinologist. This extra medication is called a “stress dose” or “updosing”. The extra-dose steps in your plan also apply if you cannot take or absorb your usual dose because of vomiting or diarrhoea.

With vomiting or shock, blood pressure can drop suddenly in people with Addison’s disease and adrenal insufficiency; without enough extra medication you may have an adrenal crisis.

Sick day rules are guidelines developed by clinicians to keep you safe and reduce the chance of an adrenal crisis. Because everyone’s medication needs differ, they are guidance, not fixed rules. Always listen to your body; even minor illnesses can seriously affect anyone with a steroid-dependent adrenal condition.

Always follow sick day rules in the following situations:

• Vomiting and/or diarrhoea (but you can still eat and drink).
• An illness needing rest or bed rest because you feel unwell, or a course of antibiotics.
• A fracture or other physical trauma. The booklet gives 20 mg oral hydrocortisone immediately after a serious trauma as an example to guard against shock; follow the dose in your own emergency plan.
• A fever above 37.5°C but below 39°C.

Even if you are not ill enough to stay off work or go to bed, you may need to updose a little for common illnesses such as colds, coughs and headaches.

Escalating updosing

1. A fever above 39°C may signal a severe infection or the start of an adrenal crisis. The booklet gives 20 mg hydrocortisone (or 5 mg prednisolone) every 6 hours as an example; follow your plan and seek medical help immediately.
2. If you cannot keep your medication down (you vomit within 30 minutes of taking it), the booklet advises repeating a double dose. If you bring up the second dose too, use your prescribed emergency injection kit as set out in the emergency plan agreed with your endocrinologist (booklet example: 100 mg hydrocortisone) and call 112 immediately, telling the team that you have Addison’s disease, may be having an Addisonian / adrenal crisis, and must take steroids regularly.
3. Addison’s disease only – fludrocortisone dose: according to the booklet, if the increased hydrocortisone dose is 50 mg or more and lasts more than 7 days, pausing fludrocortisone may be considered (it may not be needed at very high hydrocortisone levels). Do not stop or change fludrocortisone on your own; decide this with your endocrinologist.

How long should I updose?

Always listen to your body; updosing follows your plan for the duration of the illness or stress. As a guide, the booklet suggests 48 hours. If you feel better, return to your usual dose. If you continue to feel unwell, keep updosing and seek advice from your family doctor or endocrine team.

Updosing during antibiotic treatment

If you are prescribed a 5–7 day course of antibiotics, it is advised to updose for the whole time you are taking them. If you feel “normal” during this time, it is fine to reduce your dose (see Tapering). Exception: if you are taking antibiotics for a condition that does not make you feel ill (e.g. a skin condition), you may not need to updose; watch for signs of low cortisol. For longer antibiotic courses (3–4 weeks), consult your endocrinologist. If you are taking rifampicin for 6 months for tuberculosis, you need to updose for the whole 6 months.

Tapering

According to the Clinical Advisory Panel advice in the booklet:

• If you feel “back to normal”, you can go straight back to your usual replacement dose.
• After a more severe illness you may feel better gradually; in that case you can taper your increased steroid dose gradually in line with your recovery until you are back on your usual dose.

Everyone is different, so listen to your body. If you start to feel unwell when you begin tapering, return to the updosing step in your plan and seek advice from your family doctor or endocrinology team.

What else can I do?

• With vomiting/diarrhoea, sip an oral rehydration (electrolyte) solution.
• Rest in bed and take time off work as needed for recovery.
• Increase your fluid intake (water is best).
• Paracetamol may be used for pain (check with your doctor).

Other precautions

If you are having a minor or major procedure, make sure the whole anaesthetic, dental and surgical team knows about your need for extra medication and checks the surgical guidelines for correct steroid cover.

Monitoring and follow-up

1. Your family doctor provides routine healthcare such as support with minor illnesses and renews your prescriptions.
2. Make sure your family doctor understands the nature of your steroid dependency and your possible need for emergency care.
3. You will be under the care of an endocrinologist, who usually wants to see you every 6–12 months depending on how stable your condition is and whether you have other conditions.
4. If you have Addison’s disease or secondary adrenal insufficiency, you should have an emergency injection kit and a steroid emergency card; discuss these with your endocrinologist.

Quality of life

Living with a rare condition such as Addison’s disease or adrenal insufficiency can be challenging, particularly because it is an invisible disability. Not every healthcare professional will have heard of or treated adrenal insufficiency. It is important for people living with it to become “experts” in their own health and self-management. This does not mean you must be an expert in the condition; it means taking time to understand how your body feels and listening to it so you can recognise your signs of low cortisol.

• Life expectancy: taking your medication correctly, you can expect a normal life expectancy.
• Diet: no special diet or restrictions are needed, but a low-salt diet should be avoided. Grapefruit and real liquorice can increase the effect of your steroid medication and are best avoided.
• Exercise and sport: once recovered from the illness before diagnosis, and if other health problems do not limit you, some people can reach normal fitness levels. Light exercise such as swimming or walking usually needs no change in medication. Strenuous exercise such as competitive sport needs extra medication; plan any extra dose for exercise with your endocrinologist (booklet example: double the normal dose for the duration of exercise). For sports with a risk of injury, keep an emergency injection kit with you and have a team-mate trained to give the injection if needed.
• Driving: it is recommended to keep an emergency injection kit in your car in case of emergency.
• Energy levels: whatever their fitness, most people experience unusual tiredness from time to time; allow extra rest for your body to recover. Some people use “spoon theory” to pace themselves and explain their need for rest to others (and themselves!): imagine each activity in the day costs a “spoon”; when the spoons run out there is no energy left for more — so try not to use all your spoons at once.
• Starting a family: with the right medical support, women can expect a healthy pregnancy and normal birth. Specialist endocrine follow-up is recommended from the first trimester and throughout pregnancy, because nausea and vomiting may affect medication absorption. Hyperemesis gravidarum and persistent morning sickness should be managed in hospital. An increase in hydrocortisone may be needed in the last trimester. Hydrocortisone is inactivated in the placenta and does not affect the unborn baby. Parenteral (injected/intravenous) steroids are needed for labour.

Being understood

Addison’s disease and adrenal insufficiency are rare and an invisible disability. Many people — including family, friends and employers — may not have heard of them and may find them hard to understand. That is why it is important to be an “expert patient” who recognises your signs of low cortisol and can point those around you to information and training — especially on what to do in an adrenal crisis. Use your steroid emergency card and medical alert jewellery; if you have an adrenal crisis and cannot speak, they show that you are steroid dependent.

Medical disclaimer: The information on this site is prepared by a patient community for general information only. Always consult your own doctor (endocrinologist) about diagnosis, treatment or any dose change. In an emergency in Türkiye, call 112.